Learning to live with chronic pain and illness gracefully

News

My rheumatologist and I seem to be communicating better, which is a relief.

I lost some weight this week!

Good friends will be in town visiting this weekend- yay!

I had my first cortisone shots, and they seem to be helping!

No nosebleed today for the first time in two weeks! Whee!

And now some not-so-good news:

My Aunt just lost her father. To lose my uncle and her father so close together must be horrible. Unfortunately, I don’t think that we’ll both be able to go to the memorial in Georgia. I may try to go on my own if family will help me getting to and from the airport. We’ll see. It would be both sad and wonderful to see Columbus again.

My inflammation is significantly worse, which isn’t really a surprise but still disheartening. My doctor keeps increasing the number of months it may take for my current treatment to have significant effect (first it was 1-3 months, now 4-6). We agreed that if we don’t see improvement in the next 4-6 weeks then I will step up to methotrexate (MTX). Again, not really a surprise, but I had hoped for more response to the Plaquenil.

So, yeah, I’ve been terrific amounts of pain, and much more stiff than usual. I felt like I was doing “the Robot” most of yesterday, and while I could lift my hands above my shoulders, I could only do it verrrry sloooowly. I was rather nonplussed at the doctor’s last night when I realised that I had to choose between getting my shots in my neck or lower back. Really? I can’t have both? And when they asked me which area hurt more…? Yeah, that was a much more difficult question than I would have expected.

I opted for the neck, since my neck and shoulders have been so bad, and things are feeling remarkably better today (of course, Prednisone might have something to do with that as well, but a lot of the muscle tightness is easing). However, my lower back and knees feel like they’re on fire, and even my ankles are stiff. I suspect that my lower back and ankles have been like this for a while and I just didn’t pay attention because other things were so much more insistent, but my knees are definitely worse and I hope it’s just due to sleeping funny or tension or the unusually cold weather today.

I do feel like I need to adjust my pain rating- levels of pain that I thought were bad in the past really don’t compare to yesterday or today. A few weeks or months ago I would be home on the couch if I felt like this, but instead I am at work (although it remains to be seen whether this was a good idea or not.) I really need to talk about this with my doctor to make sure we’re using a consistent pain scale. I also forgot to ask him about the tremors in my hands, but that can wait until our next appointment, I think, since it only happens when I’m very tired.

One funny thing- the nurse asked if I’m allergic to bandage adhesive and I said “yes, but do it anyway”. I think that caught them off-guard, but some pink, angry skin is not going to keep me from something that will help chronic pain- it just doesn’t compare.

5 Responses

I’m functioning- I’m not sure sure about “coping”. Not that there’s ever a good time for a flare, but I do wish they’d stop happening just before company comes to visit or I want to actually go out and do something. :{ It’s like all the prep to get ready warns my body (or maybe the stress) and next thing you know… pow! ugh.

but yes, I have a bunch of pretty pictures bookmarked- I need to catch up!

Hi Elisabeth! I’m sorry you’re having so much pain this week– be careful traveling! I’m also allergic to band aid adhesive, btw, which I found out when I had a mole removed… the area around the mole swelled where I put tape or bandaids, so I eventually had to just wrap gauze around my whole neck. Also, it was summer and I was at the beach. It was a really good look.

Also, I agree with Annie, these pictures are so pretty! Very magical. I liked looking at them!